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I don't know that this helps, but...
In addition to getting "stuck" in positions I also go through periods where I move a lot. They don't look like standard dystonic tremors or a dystonic storm. (In fact, they look irregular enough that everyone i...
I have a fantastic physical response to it, but just a terrible psychological response. I've read the latter is extremely rare, but you might warn someone in your life to keep an eye out for you for a couple days.
-Kat
If you are interested in going back, depending on exactly how your dystonia presents, you might consider the FHRED (See .) It's made to take the weight of the clarinet off the player and might even allow you a little bit of extra support.
-Kat
I've had the same thing happen before; I was pretty miserable for the first few days after my shot. Like you, I'm pretty sure it was caused by someone jabbing a sharp object into a bunch of my neck muscles. I've read that it is more common when yo...
When I was working with a neurological physical therapist (who had done her homework about dystonia) she actually tried it with my feet. The specifics of how I sit because of my dystonia made it such that we could never get it set up right. (The i...
An MDS is a neurologist who has special training in muscle related neurological problems, the three most common being dystonia, Parkinson's, and essential tremor. Part of the diagnosis of these illnesses is just observing a patient and deciding wh...
A family history of movement disorders, uncontrolled movements, stress aggravating those symptoms-even to the point that the illness appears to be psychiatric, etc... could certainly describe dystonia or another movement disorder. It is reasonable...
Does anyone else have their dystonia set off by flu or fever? The worst pain/spasms I have had in the last 6 months occurred in the three hours before I realized I'd caught a bug. At that point I (there is no way to put this delicately!) lost my c...
I don't think I've gotten warm enough yet to be medically diagnosed as having heat stroke. I'm on erythromycin off and on to treat the constipation from the Cogentin, which increases sun sensitivity and so I'm always trying to balance covering up ...
I'm sorry to be unclear. When I said, "I wouldn't recommend to people who are bothered most by physical symptoms" I meant something along the following lines... I choose to take Cogentin because I would rather have physical side effects than menta...
I've actually been on 12 MG of Cogentin for at least half a year now and choose it over Klonopin or the partial relief I get from Baclofen. It doesn't come close to hiding all my symptoms, but keeps my head a couple of inches off my shoulder. In a...
If the pharmacy is that irresponsible, you might try asking your doctor for a handwritten prescription for a week's worth of medication, so that you always have a backup. Alternatively, on a drug like this that shouldn't be stopped abruptly, I'm s...
That's a long time to go undiagnosed. Yuck!
-Kat
No one is really sure what I have (see the movement disorder clinic questions that I just replied to, if you want the boring details.) I'm currently being treated as if I am a generalized dystonia case, and I have many symptoms in common with dyst...
Beka-
Thanks for your advice; I guess it's always good to be reminded of what to look for in a neurologist, and now that I reread my last post, I realize I should have been more clear. Although I am shopping around for a second opinion, I am not s...
I didn't have any strong response to Baclofen until it was combined with an anticholergic (Cogentin). It seemed like it made my good and so so times better than usual, but my bad times were a lot worse when I was on it. I finally stopped taking it...
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- At 2:13pm on February 6, 2009,
freida may said… - kdorff, i would like to share my experience with you about the Mayo clinic in Arizona. I too have some strange things going on and have been shuffled from Neauro to Neauro. It started with a twitching of my last tw fingers on my right side. It went on for a while and i thought it might be caused by Humira that i was taking for Arthrtis. My rheamatologist said No and send me to a movement Dr. He tried meds for ESS TREMOR did not work, so then he sent me to Houston to a Dr Jancovivk that specializes in Parkinsons, he did a nerve conduction test and EMG and said it looked like a Parkisonian tremor come back in 6 moths if it changed. It did not change. Then i started to have seizures but they could not find a cause for them. I was started on Topamax but had to get off because it made the pressure go up in my eyes, when i was taken off i had tremors in my right leg that were non stop and awful. I went back to my Neauro and she said i want you to go to the Mayo. Off i went for 5 day, i saw two movement Drs one for MS and one for Parkinsons. the second said immidiataly it was Dystonia with secondary Parkinsons. They did another EMG AND NERVECONDUCTION test but it showed nothing. They started me on Artane and Klonapen and it has helped so far. If you would like to know anything else please let me know but the trip to the Mayo was worth it.
Freida
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